The scientific paper “Citizens, Research Ethics Committee Members and Researchers’ Attitude Toward Information and Consent for the Secondary Use of Health Data: Implications for Research Within Learning Health Systems” was recently published in connection with the CLARET project, led by our Data Access team and involving meta consent. It included the results of the first part of the sequential mixed-methods study, i.e., the survey of the Quebec population.
WHAT IS THE CLARET PROJECT?
The CLARET project is a study of ways to implement meta consent to enable patients to grant access to their health data. CLARET studies informed consent in several research projects at the same time, as well as the frequency with which patients should receive requests for consent. With the help of surveys and focus groups comprising all segments of society, the CLARET project studies implementation of the meta-consent approach.
The Ministère de la Santé et des Services sociaux du Québec (MSSS) has mandated the Unit to define and validate the parameters needed to establish a transparency portal for citizens, which will facilitate transparency, acceptability and access to health data for research purposes.
PART 1: QUANTITATIVE EVALUATION (SURVEY)
The objective of the survey discussed in the article published in the Journal of Empirical Research on Human Research Ethics was to measure the attitude of Quebecers on the use of health data in research, as well as their attitude toward the basic elements of the meta consent model (creation of a web portal for consent and information, default settings for the use of health data in research, etc.).
In the article, the responses of citizens surveyed were compared to those of members of research ethics committees (REC) and researchers.
PART 2: QUALITATIVE ASSESSMENT (FOCUS GROUPS)
Results of the second part of the CLARET mixed-method study, i.e., the qualitative part of the study (focus groups), will be published as part of a second article.